Health-care workers are prescribing the gluten-free diet for a wide range of conditions other than celiac disease. Some people claim it’s beneficial in treating other autoimmune disorders such as rheumatoid arthritis. However, not all experts agree it should be seen as a panacea. Some experts in particular point to the importance of getting tested for celiac disease before trying the diet.
Aimee Espinoza, 29, was diagnosed three years ago with rheumatoid arthritis. Like celiac disease, it’s an autoimmune disorder, but in this case the body’s immune system attacks its own joints, causing pain and swelling. There’s no cure, but Espinoza believes the gluten-free diet has helped considerably.
Rheumatoid arthritis is “a life-changing body transformation,” says Espinoza. “You’re consistently tired. Your joints are always hurting. But it’s a hurt that you’ve never felt before; a very tight burning sensation. It affects all of your immune system, so you feel the flare-ups everywhere. It’s very sporadic. You never can really pinpoint when you’re going to have a good day, when you’re going to have a bad day. It’s ever-changing.”
Espinoza, a marketing specialist living in Santa Fe Springs, California, had been an active athlete since high school. During her 20s, she ran marathons. She had experienced chronic pain since her teens. But the diagnosis initially forced her to take a step back from exercise.
“My doctor told me that running wouldn’t be good for my joints and would deteriorate my knees,” she says. “It discouraged me from doing a lot of things to be active. I saw not working out as the safest thing for my joints at the time. For a good month, I didn’t do anything.”
She began taking medication to ease symptoms and slow progression of the disease. These helped for a time, but soon the pain began to return.
Why the gluten-free diet?
Searching for a better solution, she started researching online how the immune system works.
“All the foods that go through your gut actually affect your immune system,” Espinoza says. “Some people are more sensitive to gluten-containing foods, and it causes them to have inflammation.”
After consulting with her rheumatologist, she weaned herself off medication and began following an anti-inflammatory, gluten-free diet. After three months on a strict gluten-free diet, she saw benefits. She continued to have her blood tested regularly for inflammation, which has decreased.
Managing without drugs
“I have a lot of energy,” says Espinoza. “I have less swollen joints, less flares, less tiredness. I am not dependent on medication now.”
She also has resumed working out.
“I realized my body craved movement, so I started out small with a few jogs,” she says. “I started with low-impact yoga. I started running in the pool to build muscles around my joints.”
She also began doing CrossFit, an exercise program in which a different workout each day uses weights and body movement to build strength.
Espinoza has been medication-free for about three years, relying on diet and exercise. She encourages other young people with rheumatoid arthritis to “live like they’re healthy.” She recommends finding support from other people with rheumatoid arthritis through resources such as the online community Creaky Joints.
“You’re eating the best foods to make your body energetic,” she says. “You’re working out to feel good about yourself and feel good about your body. Living life healthfully and fully improves the quality of your life.”
But some experts remain skeptical about the benefit of a gluten-free diet in the absence of celiac disease. Confusion can arise due to various factors, including the frequently hidden nature of celiac disease, the placebo effect or a general improvement in eating habits on a gluten-free diet.
“It’s common to see people with celiac disease with headaches, fatigue, joint pain, muscle problems and muscle spasms,” says Joseph Murray, M.D., a gastroenterologist at Mayo Clinic in Rochester, Minnesota. “Those are common symptoms of celiac disease and, when you treat them on a gluten-free diet, they get better.”
Then there are rare conditions such as lung problems and skin itches due to dermatitis herpetiformis, another manifestation of celiac disease.
“Because celiac disease often is covert or hidden, it may not be readily diagnosed,” he says, “but there’s a perception that if the gluten-free diet made this, that and the other symptom better, maybe it’s worth trying in people who don’t have celiac disease.”
He argues that the underlying celiac disease can be missed in these cases.
He also does not endorse the idea of prescribing a gluten-free diet casually as a “throw-away recommendation.”
The gluten-free diet “is a big deal,” Murray says. “If you’re going to do it, you have to do it right. It has major impact in terms of restriction and burden on individuals or families. As a doctor, I don’t tell a patient to go on a gluten-free diet unless I have a good rationale. You should have clear goals in mind for what it does.”
If doctors such as rheumatologists see dramatic benefits anecdotally among their patients from a gluten-free diet, he adds, they have a duty to conduct a blind study to eliminate bias, in which participants do not know what kind of treatment they’re undertaking.
Such research is scarce or non-existent. Several studies have investigated and found some benefit of a gluten-free diet for people with fibromyalgia. However, none were designed to rule out the placebo effect.
Murray says there is a significant placebo effect from a gluten-free diet, meaning people can experience a real or imagined effect even though the diet doesn’t effectively treat their condition.
For example, a 2013 Australian study treated 37 patients with self-reported non-celiac gluten sensitivity. All had been following a wash-out gluten-free diet prior to the test. When they were fed high-gluten, low-gluten or gluten-free diets, not knowing which they had been given, all reported an increase in pain and bloating.
Patients also may experience benefits if they embrace the gluten-free diet as an “entire lifestyle change,” Murray says. If they lose weight, eat less junk food, eat smaller meals and consume less fat, they will see improvements in health not specific to eliminating gluten.
“We know a 10-pound weight loss dramatically improves knee pain,” Murray adds.
Food against inflammation
Cristina Montoya, R.D., 34, who works at Northumberland Hills Hospital in Cobourg, Ontario, Canada, was diagnosed 12 years ago with rheumatoid arthritis and Sjögren’s syndrome, in which the immune system attacks the body’s moisture-producing glands, such as salivary glands, causing dry mouth and eyes.
“I used to believe that only medications and advanced biologic therapies were sufficient to treat my rheumatoid arthritis,” says Montoya. “They have been great in delaying joint damage and minimizing disease activity but have poor impact in managing digestive issues and fatigue.”
About two years ago when she experienced frequent chronic pain, she became more aware of her dietary habits and slowly began to change them. Returning to her roots of her native Colombia, she began to move away from a Western diet and eat whole foods prepared at home. She has eliminated red meat and milk, and consumes poultry only once or twice a week. She gets most of her protein from fish, eggs and legumes.
Montoya follows a gluten-free diet. She was diagnosed with non-celiac gluten sensitivity after ruling out celiac disease through small-bowel biopsies.
“I purchase local food as much as possible, as well as fruits and vegetables in season,” she adds.
Montoya says a gluten-free diet can benefit patients with a variety of autoimmune disorders if gluten sensitivity is indicated. She includes:
- Ankylosing spondylitis
- Crohn’s disease
- Rheumatoid arthritis
- Sjögren’s syndrome
- Systemic lupus erythematosus
- Type 1 diabetes
“I support celiac disease specialists and strongly recommend my patients get tested for celiac disease before initiating a gluten-free diet,” says Montoya.
Anyone with undiagnosed celiac disease who doesn’t eliminate gluten completely from his or her diet risks intestinal damage leading to malabsorption of essential nutrients, fatigue, malnutrition and muscle-skeletal problems, she warns.
Recent research indicates patients with untreated celiac disease or non-celiac gluten sensitivity have higher-than-normal levels of zonulin in their intestines. This protein controls the permeability of the gut lining for large molecules such as gliadin, a component of wheat gluten. Montoya holds out hope that an indicator such as zonulin may soon help identify patients with autoimmune diseases who are also gluten sensitive. However, more research is required, she says.
Murray maintains there is no data to support the argument that everyone with an autoimmune disease should avoid eating gluten.
“Thyroid disease is one of the most common autoimmune diseases,” Murray says. “It’s also the most common autoimmune disease seen in patients who also have celiac disease. They commonly overlap, probably because of some genetic predisposition. But that doesn’t mean celiac disease causes the thyroid disease.”
“I’ve seen people with celiac disease who go on to develop autoimmune thyroid disease although they’re on a gluten-free diet already. I’ve seen patients who have thyroid disease diagnosed with celiac disease and [the gluten-free diet] doesn’t change their thyroid disease.”
Listen to your body
Espinoza says she was tested for celiac disease along with rheumatoid arthritis. To her surprise, the blood tests were negative. A genetic test ruled out any possibility of celiac disease.
But on occasion, when she has cheated or accidentally eaten something with gluten, she says she immediately has felt inflammation in her body. The gluten-free diet has helped her manage rheumatoid arthritis without medication.
To people struggling with a new diagnosis, Espinoza has this advice: “Listen to your body. Each person diagnosed with a disease reacts differently to certain things. Unfortunately for me, medication didn’t work, but luckily diet has.”
Most importantly, she says, pay attention to your diet. She recommends keeping a food log to track what foods help or hurt you.
“Do whatever works for your body, whatever makes you pain free,” Espinoza advises.
But Murray argues, “We want to blame something we’re eating, because it’s something we have control over. I think it’s human nature.”
Van Waffle is a freelance journalist based in Waterloo, Ontario, Canada. He is a regular contributor to Gluten-Free Living and Edible Toronto. He blogs about local food, nature and gardening at vanwaffle.com.
Cristina Montoya, R.D., recommends the Mediterranean diet as a “useful adjunct therapy” for inflammatory conditions such as rheumatoid arthritis. It also supports cardiovascular health. A 2007 study found it decreased pain and morning stiffness in rheumatoid arthritis patients. The diet emphasizes use of:
- Extra-virgin olive oil
- Nuts and seeds, particularly those rich in omega-3 fatty acids, such as walnuts, hemp, flax and chia
- Legumes: soybeans, lentils, beans and chickpeas
- Small amounts of fermented dairy, such as yogurt, kefir and aged cheeses
- Colorful, in-season fruits and vegetables
- Herbs and spices: Ceylon cinnamon, garlic, turmeric and ginger
- A variety of whole grains
- No refined sugars, processed grains, processed meats, high trans fats or saturated fats
- Limited red meats, fluid milk and fruit juices